Identify

An early diagnosis is critical for children with Usher syndrome because it allows families to plan their future and take control of their child’s care. The appropriate support networks can also be established before the onset of vision loss. Not all children that are born with a profound hearing loss of an unknown cause are referred for genetic testing. This means some children with Usher syndrome may not be diagnosed until vision loss is noticeable. Genetic testing is available - for more information see Genetics of Usher Syndrome.

Identifying patients early also has a significant impact in the world of research. The more patients that are known to researchers, the more knowledge doctors have of the natural history of the disease which will contribute to treatment and cure options. If you have a diagnosis please consider joining the USH TRUST (formerly known as the International Usher syndrome registry) to support finding a cure. This database will give you access to all the clinical trials that are scheduled to take place around the world. The Usher Coalition in the USA also runs a worldwide Family Network (known as the 'Blue Book' that gives you an opportunity to share your experiences with families around the world.

USH Trust (formerly known as the International Usher Syndrome Registry)

Usher syndrome is the most common cause of combined deafness and blindness. There is currently no cure. We need your help to change this. The USH TRUST enables the research community to identify and maintain contact with everyone with Usher syndrome around the world.

USH Blue Book (formerly known as the Family Network)

The goal of the USH BLUE BOOK is to connect Usher families. When a new family joins, their contact information is passed onto others in the network. The diagnosis of Usher syndrome can be very traumatic to a family. It affects not only the individual afflicted, but all members of the family. Often what they seek most is simply someone with similar experiences, someone with whom they can discuss doctors, tests, treatments, education, and expectations.